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What if You’re Diagnosed?

Talk to your doctor

There are treatment options available for nontuberculous mycobacterial (NTM) lung disease. You and your doctor should work together to determine if you need treatment. You may be prescribed a treatment regimen or you may be referred to a specialist who has more experience treating people with NTM lung disease.

It’s important to educate yourself and ask your doctor questions about what to expect after diagnosis.

Ask about your NTM lung disease diagnosis—Download this discussion guide to help start a conversation about your NTM diagnosis and treatment options with your doctor.

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Discussion Guide

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The Different Types of NTM

There are many different types, or species, of NTM that can cause an infection. Depending on the species you have, your doctor may prescribe you different medicines.

The most common species of NTM is called MAC, or Mycobacterium avium complex. Sometimes, doctors will call an NTM infection "MAC" or "MAC lung disease" because it’s the species most often identified in patients.

Eight out of 10 NTM infections in the US are caused by MAC.

8 out of 10 adult NTM infections

Some other types of NTM include:

  • M abscessus [ab-SESS-ess]
  • M kansasii [can-zays-EE-eye]
  • M malmoense [MAL-mow-ense]
  • M szulgai [SOOL-guy]
  • M xenopi [ZEN-no-pie]

Treatment

If you do start treatment for NTM lung disease, sticking to your treatment regimen is crucial to increasing your chances of testing negative for NTM. You may be prescribed a treatment regimen or referred to a specialist who has experience treating people with NTM lung disease.

2 medicine bottles

You may be put on the guideline-recommended multidrug therapy. This means that you will take more than 1 medication at the same time. These medicines work together to attack the NTM bacteria in different ways. Using more than 1 treatment also helps prevent the bacteria from becoming resistant to 1 antibiotic. Specialists treating NTM lung disease usually treat with 3 or more drugs.

Depending on how severe your NTM lung disease is, you may be required to take your medicine once a day or 3 times a week. Like other treatments out there, you may experience side effects. Visiting your doctor regularly will help him or her monitor how you are responding to treatment and help manage side effects.

12 month

You may stay on treatment until your symptoms get better and you have fully cleared all NTM bacteria. Once you get rid of the bacteria, you may need to stay on treatment for 12 more months. This is to make sure the NTM infection does not come back.

Treatment can be long. However, when you stick to treatment and work with your doctor, there is a better chance you could get rid of NTM.

Lifestyle Changes

When you’re living with a lung condition, it’s especially important to maintain a healthy lifestyle and limit your exposure to NTM bacteria. That’s because exercise and diet can affect how your body works. Remember, you can always talk to your doctor if you have any questions about your lung health.

Reducing exposure

While NTM is in the environment, you and your loved ones can follow these steps to reduce exposure to NTM bacteria:

  • Raise hot water heater temperatures to at least 130°F
  • Use well water, rather than piped-utility supply, if possible
  • Avoid long exposure to shower aerosols (shorter showers)
  • Disinfect showerhead by submerging in household bleach or vinegar for 30 minutes
  • Use showerhead with large holes to reduce mist formation
  • Drain hot water heater frequently to remove sediment
  • If you have a water filter, follow manufacturers’ instructions for changing it
  • Avoid continual use of humidifiers without cleaning them
  • Have good bathroom exhaust
  • For drinking and cooking, boiling (ie, 212°F) for 10 minutes kills NTM
  • Wear a mask, when appropriate, to avoid dust inhalation
  • Moisten garden and potting soils

Read more about reducing exposure to NTM:

Tips for healthy living

Clear lungs with a check mark
Managing Airway Clearance
NTM lung disease can make your body create excess mucus in your airways. Using certain airway clearance techniques in addition to taking your medicine can help you clear the mucus from your lungs.
Talk to your doctor about ways to manage mucus clearance. In addition, the resource below has examples of different techniques you can use:
Sneaker
Exercise
Light activity, such as walking, has many health benefits:
Makes daily activities easier
Provides long-term health benefits
Talk to your doctor to see if starting an exercise routine is right for you.
Broken cigarette
Quit smoking
Smoking is also a leading cause of lung problems and lung cancer. Quitting may not be easy, but it can improve your health. Your doctor can help you develop a plan to stop smoking.
Knife and fork
Maintain a well-balanced diet
Your diet has an effect on how your body works. Having a well-balanced diet can help by minimizing inflammation.

Whether you’re traveling far away or just seeing family or friends nearby, here are a few tips to help you manage your lung condition, even when you’re on the go

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Connect with others living with NTM lung disease

People with adult NTM standing together People with adult NTM standing together

There are communities available to support you on your journey with NTM lung disease. Find out how to join an online discussion or an in-person support group, and where to find resources to help start your own.

To talk to other people who have NTM disease, visit

Nutrition Tips

One of the symptoms of NTM lung disease is weight loss.

Plate with knife and fork

It’s important to maintain a healthy weight and eat a well-balanced diet. Eating right may help you feel better. Remember, always talk to your doctor before making any changes to your diet.

Stick to foods that can help minimize inflammation.

There are some foods that help more than others 
because of their high level of key vitamins and minerals.

Apple
Fruits
Papaya
Cantaloupe
Citrus fruits, like oranges or grapefruit
Strawberries
Apples
Sweet peppers
Lemons
Carrots
Vegetables
Cauliflower
Broccoli
Brussels sprouts
Kale
Carrots
Sweet potatoes
Milk carton
Other Foods
Eggs
Milk
Nuts
Cereal grains
Seafood, including fish and shellfish
Vitamin container
Vitamins
Vitamin C
Vitamin E
Vitamin A
Fatty acids
Magnesium
Selenium

Be sure to talk to your doctor or see a dietitian before starting any new vitamins.

Keep up your appetite

  • Eat five to six small meals a day and snack whenever you are hungry
  • When you’re hungry, have a high-protein snack like nuts
  • Calorie-boost a meal with sauces, cheese, or butter
  • Remember to use whole milk. Avoid low-fat or skim milk products
  • Don’t fill up on fluids
  • Want a drink? Try milkshakes and protein drinks
  • Make it spicy if your sense of taste has faded
  • Take a walk. A 20-minute walk an hour before eating helps keep up your hunger
  • Keep a food journal. Knowing what you’re eating is key

This nutrition guide is only a suggestion. You can talk to your doctor or a dietitian if you'd like help putting together a meal plan, or if you have any questions or concerns.

If you find out you have NTM lung disease, you're not alone. People like you have shared their stories in hopes of spreading more awareness about this disease.

Watch patients discuss their journey of NTM lung disease